Healthcare Policies & Innovative Research
Working group 13

Guidelines

The development of clinical guidelines and recommendations is essential for the implementation of best practices in epilepsy care.

What is this Working Group about?

The WG on Guidelines and Recommendations involves several EpiCARE members from different countries and is organized in topic-related Task Forces. Its objectives are: quality assessment of existing guidelines for rare and complex epilepsies; identification of the areas where development of epilepsy guidelines are required; development of new guidelines when needed; evaluation of the dissemination and implementation of guidelines across Europe.

All developments follow the rules of the GRADE Methodology (Grading of Recommendations Assessment, Development and Evaluation), which uses the best available evidence along with expert opinion and patient representatives to develop explicit criteria to guide clinical care. To ensure contribution from all available experts a Memorandum of Understanding was signed between EpiCARE, the European-based scientific societies (EAN and EPNS) and the ILAE. Following a large survey to identify areas where development of guidelines is needed, the following are already in the pipeline:

 

  • Pharmacological and non-pharmacological interventions in the treatment of:

– Lennox-Gastaut syndrome

– Infantile Epileptic Spasms syndrome

– Dravet Syndrome

 

  • Pharmacological treatment of status epilepticus in adults.

 

  • Guidelines for presurgical evaluation and surgical treatment of patients with complex and drug-resistant epilepsies, divided into 3 sections: pre-surgical evaluation; epilepsy surgery proper; invasive neuromodulation.

Under the leadership of the EpiCARE Salzburg centre (co-beneficiary of the 2023-2027 management grant funded by the EU) the WG is composed by discipline/content experts, a neurologist-methodologist (Dr Teia Kobulashvili) and, when needed, statisticians and information specialists. We also work in close collaboration with the Cochrane epilepsy group.

Leaders

The main goals

Core group

Related material and links

June 2025. Salzburg (Austria). Eugen Trinka. Can you summarize for us your vision on Guidelines for rare and complex epilepsies. Are Guidelines the same as recommendations? Did EpiCARE facilitate production of guidelines for rare epilepsies and if “yes” how?

February 2020. Lyon (France). Eugen Trinka

If you are interested to voluntarily contribute to this WG activities, please use the contact form to let us know.